Patients favor e-access to files

If you saw that your doctor had written "SOB" in the notes he took at your latest office visit, you might wonder what you'd done to give him such a negative impression. But "SOB," in physicians' shorthand, simply means "shortness of breath."

Concern about such misunderstandings is one of several reasons doctors are reluctant to share their notes with patients, according to a study published in December in the Annals of Internal Medicine.

The study surveyed 173 doc- tors and about 38,000 patients at three primary-care practices about sharing information with patients. After the survey, the practices joined a project called OpenNotes, in which patients were give electronic access to their files.

Although federal law guarantees patients the right to examine and get copies of their medical records, providers haven't always made it easy to do so. But the movement to give patients direct access to their health information has picked up steam, and policymakers have encouraged it as a way to empower patients to help manage their health and their medical care.

Making lab test results available directly is more common, but it's not routine, either. Just seven states and the District of Columbia explicitly allow patients to get test results directly from a lab; seven others permit it with a provider OK.

Patients don't share clinicians' ambivalence about getting direct, easy access to their health information. No matter their age, education or health status, more than 90 percent of participants in the OpenNotes survey said they thought being able to see doctors' notes was a good idea.

"In a way, that was the biggest surprise of the study," says Jan Walker, the study's lead author. Walker is a nurse at Beth Israel Deaconess Medical Center in Boston, whose practice participated in the study along with those at Geisinger Health System in Pennsylvania and Harborview Medical Center, Seattle. "It reflects consumers' universal interest in their own care."

In 2010, Quest Diagnostics, a lab services company, introduced a free smartphone application called Gazelle that lets consumers in 33 states and the District of Columbia download their lab test results directly. Since then, 125,000 patients have used the service, the company says. "Gazelle will help you have an educated conversation with your physician," says Jon Cohen, Quest's chief medical officer.

John Hadley downloaded the Gazelle app to his iPhone after he developed deep vein thrombosis and was given a blood thinner to help prevent another blood clot. At first, Hadley had to get a blood test every few days so his physician could adjust the medication dose if necessary; now he's tested every few weeks.

Gazelle lets Hadley, 53, track his results and make adjustments to his diet if they start to drift. (Foods high in Vitamin K can affect the ability of blood to clot.) "It's my health and my results; I should be able to get them as easily as possible," says Hadley, an IT manager in Parsippany, N.J.

Giving patients direct access to their medical information may help catch doctor errors and omissions, say experts.

Walker says she has heard of patients in the OpenNotes project who have reviewed their doctor's notes and realized that a test the physician called for hadn't been ordered. Even more troubling, studies have indicated that as many as a quarter of abnormal test results don't receive timely follow-up. If patients can look up results online, that figure might decline.

Many clinicians are troubled by the prospect that patients may get bad or confusing news without a physician or other health care provider on hand to help put the information in context.

Patients who use the Gazelle app can't get direct results on HIV, cancer or genetic diagnostic tests, says Cohen. There's a 48-hour delay on releasing all other test results, to give physicians a chance to contact the patient first.

Patients who participated in the OpenNotes project can't access visit notes until their physician has signed off.

"No one wants to see their diagnosis of cancer on their own without a medical professional," says Jonathan Darer of Geisinger Health, which makes most patient information available online."

This column is produced in a collaboration between The Post and Kaiser Health News.